Hi hope your doing well How’s life going atm me and my partner just found out one of our twins might possibly have HLHS praying Mondays scan it was just the angle 📐 he was at our world sank yesterday 😢
HI Meghan, I'm wondering how your feeling today. My nephew was born with HLHS and had the Norwood procedure done;. He is now 20 years old and graduated from high school. His heart is starting to fail him and they are hoping to put him on a transplant list. I know a new heart will be tricky given the rerouting of pipes from his Norwood Procedure and it's risky. Just one day at a time for now
In 94 i was told my only option for my son for hlhs was transplant. Told he probably wouldnt make it past 2. Had no idea in other states he could have surgery in other states. So i freaked out when i decided to let him go. Horror of my life.
I met a special guy who I really like. And he told about his heart condition. I don’t know what the future hold for us. But I’m really into him, but I don’t want to lose someone I love. I’ve never been in love or in a relationship, and I don’t know how to deal with this or what are his chances to live🥺 I need one help
Thanks Meg for posting this video. My daughter will be born in 2 months and she has HLHS. My biggest questions (and worry) to the doctors has been "What will her life look like as she gets older" and your videos have offered a very encouraging and hopeful perspective and calmed a lot of my fears. God Bless you!
You can really do this with 1/2 a heart?!!* 😮👍😊👍 Man, I'm out of shape and need to start kicking myself in the butt and start my adventure! 😳😉 *(Do you ever need an extra oxygen supply with your trips? It seems like you'd need it for extra exertion and increased altitude. I know I definitely do.)
Thank you for sharing your experience and advice on fluid retention. I also liked your tip for posture and breathing. I was born with a hypoplastic Left Heart Synonym (defect) and I remember a time when my Doctors freaked out when I had fluid retention in both my legs and midsection area. They immediately jumped to the conclusion of heart transplant when what I really needed to do was adjust my medication. Luckily my Mom and I felt like we should adjust meds and it's been helping me. I will also admit that I don't like to exercise either, though my issue is a laziness/ lack of self modivation. One thing that does help me is dancing to music or jumping on a trampoline. Occasionally I'll feel up for a walk around a block.
Megan our family loves and adores you!! God bless you!! My Granddaughter has HLHS, she will be 2 years this coming January. Since her day of birth, and her 1st stage of surgery, I have watched you and you have inspired me. You give are our family Hope, Faith, and knowledge in soooo many ways you will never know!!! Thank you!! God bless!!! Dont stop the fight!!! Oxox
I was born with HLHS, it’s been a difficult ride in and out of hospitals for most of my childhood. I turned 25 years old in April and I’m thankful I’m still here today. I just did a physical test and multiple heart tests and have been told I’m strong enough to start my own family now and give birth naturally. I’m so thankful for everything, for what my god has given me this gift. He truly loves me. Be at ease people, your sons and daughters will live long and happy lives god willing 💙
Great that you show your true feelings and apprehension ,beautiful place. Came to your channel through your interactions with William Gonzalez . You are amazing and your story will help many people. Thanks for sharing it.
Such a beautiful place! No idea how you manage it! My HLHS warrior is 9, and she struggles with stairs and walks over 20 mins and is a parttime wheelchair user ❤️
I wondered about the whole bear thing. Guess you answered my question. Love half dome, but never summited. Congratulations. Great way to celebrate an anniversary. Love you guys, Becky
You are such an inspiration to my husband and I. Our little guy is three months old and has HLHS. I pray everyday that he will grow up with the same kind of ambition and determination just like you. You’re amazing!
You are amazing! How was it at a higher elevations? Our youngest is 19 months old with HLHS, and you are such a role model for us! I hope he can happily get to his adult years and be as adventurous and active as you! We went to Yellowstone a couple weeks ago, and he did so great. (Yay free National Parks pass! Do you have yours?) Thanks for sharing your journey and inspiring so many who are affected by HLHS. ❤
Awesome video Meg. This smalls tips help me as a heart mom . I want to be prepare best way I can for little one who also has HLHS . Thank you so much for this video 💙
Also, for a topic idea. Can you share your struggles of being a medical patient and how you got over them? I'm going through that a little, and it would be nice to hear how you can overcome your struggles of being a medical patient.
Great video! Mtmy grandson has hlhs. He wasn't a good candidate for the operations, so had a transplant at 3weeks old. He's 7 now and competes in jiu jitsu.
Hello, this is so inspirational for me, my Son Day’Cion has HLHS. and he has had 2 of the surgeries and is scheduled to have the 3rd one on Aug 30th 2018 which is in 6 days from today!. I just want to say thank you so much for this video it’s helping me get through these stressful days right now. Thank you so much
i am 13 with hlhs almost 14 actually. i can relate to all of the things you mentioned especially the first 10. i actually starting crying while watching this, not cause its really sad just cause i have to worry about all these things daily. Watching this also helped me realize what was worrying me so much. i cry every time i hear the word transplant, cause i am afraid of having to get one ever, even though doctors have said i wont need one till in like my late 30s early 40s. one thing i really hate is when people just stare at me when i walk down the hall in school or when i get out of the car when we park in the handicap spot when it is really hot or cold.
Thank you so much for sharing your story, Meghan! Our youngest has HLHS and LOVES sports just like you! In fact, when interviewed for Make a Wish Foundation he asked to go SKYDIVING! He has to wait until he's 18 but they've now put it in his medical charts that he loves extreme sports, roller coasters, and one day would like to skydive lol. You're a true inspiration and I can't wait to show him this video <3
Mary Powell - I just saw this too so happy I did . My son is 4yrs old and born with HLHS as well and has gone through all three hear surgeries 💙 Hope your baby girl is doing well too
This is so awesome. My daughter is 10 and has hlhs. I have four kids but she is the most fiesty adventurist spirit of all. You maybe have given me a glimpse of her future. Her fighting spirit has her kicking butt and she is going to be in a study because they are amazed at how well she is doing. Seeing older people with this condition makes me feel hopeful for her. Thanks for posting.
R Porterfield - glad your daughter is doing so good I always wonder how older kids do with this heart defect my little boy is 4yrs old and also has HLHS💙
I am 16 years old and have HRHS and i do have to say all of these are true and i kinda laughed at the part where you said people ask you if you love people half as much because i get that all the time.
Hi I'm 11 and I have HLHS. These videos help assure me that I can live past expectations of the doctors. They told my mom I wouldn't live through my 1st surgery. My number 1 most annoying thing for me is that people ALWAYS underestimate me
